Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

@janni1

My kidneys failed after liver transplant for PBC, I ended up with cirrhosis of the liver.
Thought my kidneys may pick up but they haven't so now I am waiting for a kidney transplant.

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@janni1, I can't even imagine how you must have felt when you found out that you kidneys did not recover after your liver transplant as hoped. My kidneys did not respond to dialysis prior to transplant, so I had both organs at the same time. Are you currently on dialysis? or will you need dialysis? How does the listing/wait work, since you already have a transplanted liver?
Are you currently on the active kidney transplant list?

What questions do you have as you prepare?

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@rosemarya

@randallscott1 - Welcome to Mayo Connect!
I am excited to meet another person with a liver transplant. I actually have 2 organs, liver and kidney, and I received my transplant at Mayo Rochester in 2009 . I live in Kentucky and I had PSC (Primary Sclerosing Cholangitis) that caused my liver and kidneys to fail.

Randall, what about you? When? Where? What would you like to share or ask about your transplant?

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My kidneys failed after liver transplant for PBC, I ended up with cirrhosis of the liver.
Thought my kidneys may pick up but they haven't so now I am waiting for a kidney transplant.

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@rosemarya

@kearly, Good Morning, and Welcome to Connect! This is a great question that many many transplant patients have asked. I felt so poorly prior to transplant that my hair was very low on my list of concerns. It makes me happy to know that your loved one is feeling good enough to consider this!
Here is discussion that I want to share with you. Read, and ask your question there so that others with a similar experience will see it in the Daily Digest and be able to reply.
- Can I color my hair after transplant?
https://connect.mayoclinic.org/discussion/hair-dye-after-transplant/

.
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Is your bride pending an evaluation for liver transplant? or Is your bride pending (waiting) for a liver transplant? What questions do you have as caregiver?

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I coloured my hair before and after transplant..(now 20months post transplant) and never had any issues. Make sure she has a patch test before leaping in to the full monty though. X

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@vera77

Hi Parmcat. Thank you for sharing ur joirney. My husband is told to be prepared for liver transplant due to his liver cancer. We didnt yet apply to waiting list. My question now is how often do you have to visit clinic after transplant is done. Is there like mandatory observation, tests u have to do every week, month or some in clinic procedures?! My husband is USA citizen, but we live in a different country. So my concern now do we have to stay in USA all the time or after transplant we can go back.

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Hi @vera77, you are asking very good questions that will need careful consideration for doing a transplant in US when you live elsewhere. There is a period of time directly after transplant that you as the caregiver and your husband would need a short-term stay near the clinic where you get the transplant as well as regular follow up appointments.

Mayo Clinic staff have written these blogs that outline a bit more detail about liver transplant at Mayo.

- Liver Transplant at Mayo Clinic https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplant-at-mayo-clinic/
- What to Expect: Post Transplant Care https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-annual-post-transplant-follow-up/
- What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/

@rosemarya @jerrydrennan @amyintucson @arqui02000 @2ndlvrxplantmom @karen51 @parrot53 @eparker6 and many others can share their first-hand experiences with post liver transplant care and short-term stays.

Are you thinking of applying to Mayo Clinic for transplant?

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@randallscott1

Liver transplant patient

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@randallscott1 - Welcome to Mayo Connect!
I am excited to meet another person with a liver transplant. I actually have 2 organs, liver and kidney, and I received my transplant at Mayo Rochester in 2009 . I live in Kentucky and I had PSC (Primary Sclerosing Cholangitis) that caused my liver and kidneys to fail.

Randall, what about you? When? Where? What would you like to share or ask about your transplant?

REPLY
@rosemarya

Hi, @nrbecerril. I am sorry that you have caught a cold and hope that you are not feeling too miserable. I don't think that this is a 1st post-transplant event that you were looking forward too.
My first Tip is to tell you to stay hydrated and maintain your medication schedule. Another thing is to keep check of your temperature, and if it goes above 101 F (38.3 C) or if you have a lower fever that lasts for more than 2 days, you should call your transplant coordinator.
I don't know why your doctor said "No tea" , unless you are drinking an herbal of unusual blend. I have not heard this before. Maybe someone else has an idea and will share it here.
As a transplant recipient, you will be able to take certain over-the-counter medications for discomforts of a cold. You might have received a list from your team. My word of advice is to check with your transplant team before you take anything because they will know what could react with your transplant medications. Sometimes a pharmacist or even a PCP , ER and hospital personnel don't know the complexities related to a transplant.

So my advice is to stay hydrated, take your transplant meds, get rest, and if any questions that concern you - call your transplant team. When you are newly transplanted like you are, please do not hesitate to consult your team.
And one more thing from my experience - I discovered that since my transplant, it takes me longer to get over a cold than it did before my transplant.

I hope you feel better soon!

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May I ask if you drink tea? If so, what kind? They said only black tea and that is all I'm allowed to take. The one tea I dislike. Something about messing with my anti rejection meds.

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@nrbecerril

Hi. I'm post liver transplant 9 months. First time with a cold. Any tips anyone can offer? What works best? Doctors say no tea but I live on teas. No herbal they said. Please if anyone has tips I really need help from others. Got a fever on first night, I been taking Tylenol but stopped today. Any input would help. Thank you. Healing to everyone. Also when did everyone start feeling better? I still feel like a zombie.

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Since you mentioned that your doctor said ' "no tea", I am assuming that your transplant team knows of your cold. Is that correct? If they don't, then let them know. There are a lot of ugly viruses and bugs circulating at this time of the year. He/she might want you to get tested for flu, covid, or any number of tings that can affect a newly transplanted individual.
Not to frighten you, but sometimes a cold is not just a cold. I have made many middle of the night visits to the ER with high temperatures or other symptoms. Some were infections that needed treatment, and others were nothing. If in doubt, get it checked, even if it is middle of the night. 🤍

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@nrbecerril

Hi. I'm post liver transplant 9 months. First time with a cold. Any tips anyone can offer? What works best? Doctors say no tea but I live on teas. No herbal they said. Please if anyone has tips I really need help from others. Got a fever on first night, I been taking Tylenol but stopped today. Any input would help. Thank you. Healing to everyone. Also when did everyone start feeling better? I still feel like a zombie.

Jump to this post

Hi, @nrbecerril. I am sorry that you have caught a cold and hope that you are not feeling too miserable. I don't think that this is a 1st post-transplant event that you were looking forward too.
My first Tip is to tell you to stay hydrated and maintain your medication schedule. Another thing is to keep check of your temperature, and if it goes above 101 F (38.3 C) or if you have a lower fever that lasts for more than 2 days, you should call your transplant coordinator.
I don't know why your doctor said "No tea" , unless you are drinking an herbal of unusual blend. I have not heard this before. Maybe someone else has an idea and will share it here.
As a transplant recipient, you will be able to take certain over-the-counter medications for discomforts of a cold. You might have received a list from your team. My word of advice is to check with your transplant team before you take anything because they will know what could react with your transplant medications. Sometimes a pharmacist or even a PCP , ER and hospital personnel don't know the complexities related to a transplant.

So my advice is to stay hydrated, take your transplant meds, get rest, and if any questions that concern you - call your transplant team. When you are newly transplanted like you are, please do not hesitate to consult your team.
And one more thing from my experience - I discovered that since my transplant, it takes me longer to get over a cold than it did before my transplant.

I hope you feel better soon!

REPLY

Hi. I'm post liver transplant 9 months. First time with a cold. Any tips anyone can offer? What works best? Doctors say no tea but I live on teas. No herbal they said. Please if anyone has tips I really need help from others. Got a fever on first night, I been taking Tylenol but stopped today. Any input would help. Thank you. Healing to everyone. Also when did everyone start feeling better? I still feel like a zombie.

REPLY
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